June 13, 2010 at 5:28 pm #38943beth-oSpectator
Margaret- good pick up. I didn’t want to get into my story too much but yes, there was an infection.- 2 years ago and now healed. So Kristin, hang in there. Glad you don’t feel alone.June 11, 2010 at 12:58 pm #38942darlaSpectator
I sure hope we can work this out. It will be great if we can all get together.June 11, 2010 at 2:07 am #38941lainySpectator
Our dates are not solid yet but probably July 24 – August 7. I will let you know.
We could have an afternoon at the Lake we will be staying at. Darla, you, us and whomever! Will keep you on top of the dates.June 10, 2010 at 11:05 pm #38940
Kristin – if you email me your home address, I have some ‘extra long’ tegaderm film that I am willing to mail to you to try it out over your bandages! The VA (Veterans Administration) sent about 10 packages of this oversized Tegaderm Film and we have not used it nor do we plan to cause they finally got the correct size sent to us (and we have plenty)! You could cut this oversized film into three pieces or just cut in half and use it over the drain site. This would work well over the ‘depends’ bandages or over the gauze.
I know it is very expensive and your insurance may not even cover it for you, but this did not cost us anything, so pop me an email. My email address is firstname.lastname@example.org
And please also let me know when you will be in Wisconsin. I would love to meet you, Darla, Lainy and Teddy when / if you are all in Wisconsin. Milwaukee is about 1 1/2 hours from home, so I have no problem taking a road trip. We have been there so often in the past two years that I can just put my car on autopilot and it would find the way!
And if Tom is extra special nice, I’d even bring him along …. he would love to meet Teddy!
Go with God,
MargaretJune 10, 2010 at 1:14 pm #38939
Hmmm… my bile doesn’t exactly smell “sweet”! It’s always a little funky and unpleasant, but the home health nurse has checked it numerous times over the last 6 weeks, along with the onco’s nurse and the radiologist’s nurse, and nobody was alarmed. The one time it did get infected it had a different, horrible “fishy” smell.
Maybe it’s just that my character is funky rather than sweet…June 10, 2010 at 3:08 am #38938
This post is for Beth O. Beth, actually bile should have almost no smell. If the bile is starting to smell, that means an infection is starting. Tom had an external stent for 7 1/2 months after his initial resection and one of the things we had to watch out for was if the bile started to smell. (never happened) if anything the bile should have a slightly sweet smell. This past month with Tom’s now 6 month old external drain, the bile started to smell and it was putrid, and the first thing the doc did was a tube exchange and put him on Levaqin (antibotic) right away. Now the bile is back to it’s sweet smelling self.
MargaretJune 9, 2010 at 11:00 pm #38937marylloydSpectator
That’s good that you went to an experienced team. I guess it’s just going to take time. I feel so bad for you but am glad you are going ahead with your plans. What is the DRs. future plan for you? Are you going to need the drain permanently or is it temporary? At least you’ve gotten great advice from very experienced people here on the board. Take care and have a great time with your family!! Best wishes, MaryJune 9, 2010 at 1:05 pm #38936lainySpectator
Kristin, looks like we will be in Milwaukee for 2 weeks about the 7th of August.
Wish you were there at the same time and we could pull Darla in and maybe Margaret.June 9, 2010 at 12:34 pm #38935
Kris, Beth, Margaret,
Thank you soooooooo much for all the practical suggestions! They will be a HUGE help because I am really determined to go see my family.
That’s the wonderful thing about this board. People post here about problems that seem unsolvable, and situations that make them feel so alone, and in a few hours, they are always SHOWERED with practical tips, stories, and encouragement.
You guys are the BEST!! How can I ever thank you?
KristinJune 9, 2010 at 11:36 am #38934devoncatSpectator
I feel so bad for you. The drain pain is something you cant describe if you never had it. I travelled with the drain to visit a friend in Copenhagen (a 4 1/2 hour train ride). I suggest bringing loads of medicine, several pillows so you can prop yourself in different ways on the journey, a bottle of antiseptic gel, and a good understanding of how to live within your limitations. For me that meant not going to the antique district in Copenhagen and taking taxis (I am the cheapest person around and spending money on taxis hurts. But I needed them so that was that.) It meant not lifting the baby (which also was hard not to do) and all sorts of other things. I remember having the constant struggle of what I wanted to do versus what I could do given the drain and its pain. But I managed and you will too.
Have a wonderful time.
KrisJune 9, 2010 at 1:39 am #38933beth-oSpectator
I had 2 drains going home after some surgery a couple of years ago. I have read through a bit of the other coments you have made to try to visualize the tube. The stitch. I imagine is just holding it in so it wont fall out? If that is the case it must hurt when it pulls, probably something as simple as gravity would be uncomfortable. You could take some silk tape and rip it length wise like a long skinny strip. Use that as the anchor to keep the tube in. Then if there is any pulling it would pull on the tape first (The tape needs to be tighter than the stitch)- the other thing is the leaking. So When you say the drain bag is collecting bile and the tube is leaking I am thinking you are leaking bile around the tube site? So there are a couple of ways to approach this. First you could take the gauze and make a slit so that you could slip it around the tube at the insertion site. Snug it down and tape it tight. If that doesn’t work you could ask for an ostomy bag. What you would do there is take the drain bag you have, place it and the tube inside and then cut the part that attaches to the skin just big enough to go around your tube where it goes into your skin. These work great because they are made to handle getting wet without falling off, they are also made to withstand bile salts and gastric acids without breaking down and finally once you get the hang of it and it is on there good, you only need to change it like every 4 days….giving your skin a rest. That was actually what finally worked for me.
If all else fails or if you can’t get anywhere with the MD ask if you can see the skin care nurse or the ostomy nurse. They do amazing work. You need to stay on it though because having that wet bile on your skin all the time will hurt like heck. It is like acid…well, it is a gastric acid and it feels like it is burning because it is burning you! One other tip on the pain. You could ask for some spray to use here and there esp with dressing changes …I forget the name of it but, it is the spray they use on little kids before they put in an IV. It numbs the skin for a few minutes, long enough to get the dressing back on.
I hope this helps. I know just were you are ….and feeling like you can’t leave the house due to drainage and stink (you didn’t mention the smell but mine smelled awful!) It is hard , but hey your granmother doesn’t mind if you are damp or smelly! She used to bounce you on her knee when you were like that. Find a way to go soak up some of her love. THAT will be the best medicine you can get!
Hang in there, your comrad in arms-
Beth OJune 9, 2010 at 12:37 am #38932
I’m very happy that you have decided to make the trip to Wisconsin to see your grandma! That is awesome. I agree, you can be ‘leaky’ here or there, it makes no difference, it is what it is!
Tom is about 6ft, 117 lbs. Very skinny. But with the bile leaking out of the hole the doctor decided to go with the larger 12 guage tube. The extra holes (that the doctor modified himself) just allows for more bile to go through the tube and not follow down the outside of the tube which means bile leaking out of the wound in the side. Since they have done that Tom only has leakage when flushing the tube.
I don’t know what your ‘size’ would have to do with the larger drain tube, but when they suggested it for Tom we were all for it, if it meant not having bile leak all over everything.
Remember the bleach for getting bile out of clothes. I discovered that bleach would work one day by draining his bile into the sink and adding bleach (just to see what would happen) and wonder of wonders, it turned the bile into clear liquid! Therefore I knew that bleach would take the bile stains out of sheets, blankets, clothes! No more bile stains in this house.
The home-made bandages made out of depends or diapers work well too. They absorb more than gauze pads! Sometimes you just have to be inventive!
As a side note, it may be just a matter of time too for the ‘path’ that the drain tube takes to start to close up on the drain tube. (that never happened in Tom’s case) If/when it happens you will notice less and less leakage. (I’m hoping it happens soon, for your sake)
Go luck, keep us posted and let me know how the new bandages work. Remember to build a slot in them so that the drain tube has a place to go. I always cut a large square then cut one slot down to about the center, taped all the edges, place that over the wound with the tube in the slot. Then tape it up!
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJune 8, 2010 at 10:06 pm #38931
Well, I just came back from the clinic, and again they said that there really isn’t anything they can do– the hole in my liver simply needs to heal up, that’s all. The tube is working fine, it’s draining tons of bile into the bag, and my bili has dropped dramatically, and further drain changes will just mean starting all over again with the healing process. (That last part makes sense to me, alas.) And of course today, when I saw the doctor, the thing was hardly leaking at all… Just like how your car won’t make that funny noise again when you take it to the mechanic!
I may just make myself some Depends bandages like Margaret suggested, and head off to Wisconsin anyway. I can be happy (if leaky) there rather than bored (and leaky) here. And being back “home” is therapeutic in itself. I swear that’s what stopped my tumor growing 2 years ago. It started then stopped again for no reason.
Mary, the most recent 2 drains were done by the head of Interventional Radiology at University of Kentucky Hospital, which IS a big teaching hospital. They said they do several of those procedures every day! The previous 2 were put in by a crew of bozos at a smaller hospital, but my oncologist was furious about the way I was treated there and got me referred to the U. Hospital.
Time to sit out on the back porch with some iced tea, and let my dog give me adoring looks. That’s very healing too!
Thanks so much everyone!
KristinJune 8, 2010 at 6:24 pm #38930marylloydSpectator
I have not had time to post the past month or so but have been reading about your trials. All I can say is that if this was happening to me or my Tom I would be raising holy ****. Seriously, I do not think this is “normal” or some thing you just have to “live” with at all! There have been some pretty appalling stories on here lately about what people are being put through and yours is one of them. Tom had many external drains during the first 6 months he was diagnosed and they NEVER leaked, not a bit. Pain is not normal either. He had some pain when he had two drains placed for brachytherapy but that was because it layed too close to a nerve. That was just a temporary drain for a few weeks. I really, really think you need to go to an expert at these procedures. I don’t know how big the hospital is where you are treated but the bigger the better as far as I’m concerned- when it comes to this. The more practice they have and expert they are the better! I can’t imagine what you’re going through and am very sorry to hear all of this when you’ve been doing so well for so long. I hope you can get this taken care of as soon as possible. I can’t even imagine a Dr. telling us Tom would just have to live with bile leaking all over him all the time. No way!! Is it leaking inside you too?!! It must be just running out of your liver. That’s absolutely crazy. Please go to a University Hospital or somewhere else where they can take care of this for you. Sorry for being overbearing but it really, really isn’t normal!!! Take care, MaryJune 8, 2010 at 12:01 pm #38929
Thank you all so much for your encouragement! And Margaret, a special thanks for your practical suggestions. I am going to call the clinic today and see what they tell me– after 6 weeks this is just getting worse and not better.
They already told me they don’t want to put in a larger tube because I’m not very big (5’2″, 115 pounds) but I don’t see what that has to do with anything. Is Tom a big guy? And, how do the extra holes help?
Fingers crossed… I’m STILL hoping to see my Grandma. she and my mom live in Milwaukee, and we have a summer cottage further north near where Darla lives– a lovely part of the state.
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